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Did Your Persistance Help Lead To Your Diagnosis?

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I'd like to hear stories of people who experienced persistent symptoms but were either misdiagnosed or their doctor insisted the problems were all in your head. Specifically, I would like to hear stories from individuals who took a very active role in getting their own diagnosis of Celiac (or any other disease, really).

I have Celiac disease but my story isn't particularly dramatic. I was told I had IBS for years until I insisted my doctor test for Celiac after my dad was diagnosed.

Please share your stories. I'm looking for people to talk to for a project I'm working on. (Don't worry, I won't use your story unless I've communicated directly with you.)


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I was misdiagnosed for over 10 years! I went to different Dr's (military) multiple times and was told that it was either normal to have constant diarrhea to the point where I could hardly leave my house, or I had IBS. When I was pregnant it got so bad that I literally only left my house if I absolutely had too. I told my OB/GYN and she told me all I needed was more fiber!! Another Dr. told me that it was totally normal for someone to take the max dose of Immodium every day. She didn't seem to care when I told her I was doing that and I STILL had uncontrollable diarrhea. It was a nightmare, complete nightmare! That entire time they never once thought I needed to see a GI doc.

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I was given multiple diagnoses, but none of them seem to fit. I was sick for about 8-9 months after a severe bout of mono.

Had seen a GP, rheumatologist, infectious disease dr., and gastroenterologist, and none of them ever suggested it.

My mom read an article about Celiac in Time magazine (July 2004) and asked me to be tested for it.

None of my doctors ever considered it.

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I haven't been tested for celiac but I definitely have gluten intolerance with some assorted other intolerances and I had a systemic overgrowth of candida. I was never diagnosed by a MD. A friend gave me a book about food allergies and I realizes that all sort of what I thought were seperate issues could be traced back to food allergies. I went to see a naturopathic doctor (ND) who did an IgG allergen test and diagnosed me with the candida. Since my diagnosis my arthritis and migraines are gone completely. I also feel much healthier over all and less brain-foggy. None of my doctors ever thought of food intolerances because my problems weren't GI related. To this day they accept that I have these intolerances but I don't think they really understand them. The last time I was in the hospital and I tried to explain my diet the doctor wrote on my chart that I needed a "diabetic diet" and the food people brought me a gluten filled dinner!!! My poor husband had to bring me my food thru a multiple day stay because they couldn't understand gluten free, cows milk free, yeast free foods!

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I'd like to hear stories of people who experienced persistent symptoms but were either misdiagnosed or their doctor insisted the problems were all in your head. Specifically, I would like to hear stories from individuals who took a very active role in getting their own diagnosis of Celiac (or any other disease, really).

I've had symptoms since approximately age 11. I'm 34 now. When I was in high school I started doing my own research on digestive problems because I the doctors I was dealing with were clueless. As soon as I read about celiac it sounded like my symptoms exactly - except for the weight loss aspect. For the next fifteen years I brought it up with each new doctor and each one dismissed it because I was overweight.

Five years ago, my grandfather was diagnosed with celiac. I told my doctor at the time who said, "Celiac disease isn't hereditary." In summer of 2007, my aunt was diagnosed with celiac and told me that it was indeed hereditary. She suggested that I go gluten-free and I started feeling better immediately.

My primary care physician sent me to a GI specialist who proceeded to tell me that celiac was not hereditary and that the blood test results would be conclusive even though I had been off gluten for three months. The blood tests of course came back negative, so then he tried to talk to me about IBS.

I don't care that I don't have an official diagnosis, I feel better off gluten and I will never go back.


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